hi all, only seen this forum and though i would aske afew questions was diagnosed in feb this year im starting to suffer from extreme fatigue where i cant really function, if i have plans on day when i simply havent the mental or phsycial energy to do any tasks etc, or i make plans when i feel ok then when time comes to do anything bamb extreme fatigue hits . this is causing problems in life as long term no one wants to look after/be around someone that can hardly string a conversation together never mind do anything some days, my girlfriend is trying to be nice but i think she drather i just move away. been staying at parnets house to and they cant put up with me either, they think im seriously depressed, when really i just can function im on 400mg's a day, but i have starting cutting them in half to stop the side effects, half a day is ok, but im guessing this is very bad as im only getting half the drug, i have been using concerta 36, and adhd drug to help with the fatigue, and have been managing 10 mile cycles,
You are here
been on imatinib 5 months
Categories:
the adhd drug really helps with my energy and makes me feel normal, but im sure this is not good long term. but at the same time i feel its the only way to go out and enjoy a day out at times.
has anyone else found anything that they can use to boost their energy??? as right now the fatigue is really damaging my relationships with the people around me!! i dont want to completely alienate myself from friends/family
You should not under any circumstances reduce your daily dose- You do not say which TKI your are taking 400mg of--- I assume it is imatinib? Fatigue is a side effect but as you go on you will find ways of dealing with this and learn to pace yourself. It does sound like your family may have reason to think you might be suffering from depression. You should talk with your haematologist- about why you should not half the dose or even reduce it and about the side effects you are suffering. Then you should talk about how you feel about the whole diagnosis and how it is affecting you emotionally.
If it is imatinib then Darley has given good advise about taking it at night with/after your largest meal- that way you will sleep off the fatigue and hopefully this will allow you to overcome these initial problems.
CML is not a disease you can play around with- you need to talk with your doctor asap but before that you need to resume taking your full dose immediately.
Sandy
Rather than just adjusting things and reducing your medication, I'd strongly advise you to talk this through with your consultant. Believe me, you REALLY don't want to run the risk of your leukaemia taking hold!
That would make anything you're now experiencing pale into insignificance.
I've been on imatanib since clinical trial.... About 15 years. Though I'm now on the DESTINY trial to reduce dose and hopefully come off it altogether in due course.
I'm not aware that extreme lethargy is a contraindication. In my case side effects were tiredness immediately after I'd taken it - hence the night time routine - and severe cramps. It may be coincidental and it may be they can help you further. I wouldn't recommend you just reduce your meds though. As you're just recently diagnosed you will no doubt have a lot on your mind. It might be depression. Reach out and ask for help.
I don't know what times you take your medication, but I know that me... And a few others take them immediately before going to bed. Whatever you do though DO NOT stop taking the dose you should be taking.
Having had it for 22 years and gone through hell and back in the "old days" before TKI's when treatment options were severely limited, I can absolutely confirm that taking the likes of imatanib is a relative breeze.
I went on it after a host of problems and including a bone marrow transplant which nearly killed me in itself. Indeed pre TKI's we've had 4 occasions with me in ICU and being told I'd not see the week out!
It's probably having gone through all that which makes me much more pragmatic and accepting about "just having to take imatanib" every day. There's no way I'd be "non-compliant" or mess about with my medication and risk going back to that situation.
I'm on the stupidly named DESTINY trial and believe me I'll go straight back on to full dose if there's any negative impacts showing with my counts. I'll be back on full dose in the blink of an eye because I know you don't mess with CML.